The Chronic Diaries: Life Filtered Through Leukemia

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9/24/13 Can you say AUTOIMMUNE?

Man, there are lots of autoimmune diseases. There are so many, it’s hard to believe that we all don’t have one, maybe two. Google any website that can furnish the exhaustive list, check the symptoms, and see how many you have or are developing. At least two, probably more.

None of these sound very good to me, or to the people who have them. If I have neglected your particular, severe and debilitating autoimmune disease, please do not think I purposefully omitted it. There are dozens and dozens . . . simply too many to list by name. Go here if you want to learn more about them: http://en.wikipedia.org/wiki/Autoimmune_disease Wikipedia is not the answer to everything, but it sure is a useful starting place. Make yourself at home there. Send them a donation while you’re at it.

I have already collected one suspected autoimmune disease: Restless Leg Syndrome.RLS causes me no end of trouble since it dramatically interferes with sleep. I take medication for that, which is mostly effective, but sometimes nothing helps. When that happens, I usually get up, come down to my studio and write in my blog. Well…there it is and here I am.

Autoimmune diseases tend to show up more frequently in people who already have suppressed immune systems, such as me. My immune system is as reliable as a Fiat on a desert roadway, and just as hard to maintain since Fiat parts are not usually available nearby, wherever you happen to be. I seem to have collected my second one: Psoriasis

My Psoriasis started out bad and seems rapidly getting worse. It is what it is. It could be worse than Psoriasis! I have a reader of this blog who is a CLL patient who also happens to have Multiple Sclerosis. Her hands are full. When I think of that, I am embarrassed to think that I am appearing to complain about Psoriasis. But, you might need to know that there is more to Psoriasis than just a mere skin condition; it is rather involved and difficult to treat…especially for one like me. The older I get, the more complicated these things become. I am collecting chronic diseases like some philatelists collect postage stamps. As my Physician Friend Frank said, “The difference is that a good stamp collection appreciates in value.” We both laughed out loud when he said this.

I am fortunate to now be under the care of my Physician Friend Frank (We’ll henceforth refer to him as PFF), who you met here when I first started this blog. He was very encouraging to me when I was first diagnosed with CLL, and offered me a good sounding board and effective counter to my own moroseness, which can be consuming. One must not allow oneself to be consumed with moroseness. A good British stiff upper lip is far more productive than an overdose of moroseness. PFF was my friend before he became my physician. There is no awkward doctor/patient relationship that must be established and confirmed before trust can be developed, or for me to know that my best interests are at heart; PFF already has my best interests at heart. He did so prior to me being his patient, and served me as a friend before he ever became my physician. PFF helped me sort through the mountains of clinical information I had read about CLL, without the benefit of clinical training to interpret it. He counseled me. He warned me. He set me on the right track. When I was at my most suspicious of everything Hemosapien and Gooday were telling me, looking at them, the bearers of bad news, the prophets come to tell the king of God’s soon coming judgment, as if they were my enemies rather than my allies, that I was off base. He warned me that they would go to bat for me and do everything in their power to treat me as best they could for the disease that was a misfire in my own body. PFF was right. I was wrong. I don’t mind admitting that I was wrong. People should try it more often.

Here’s what Jonathan Swift said about admitting one’s error:

A man should never be ashamed to own that he has been in the wrong, which is but saying…That he is wiser today than yesterday.

I’ll have to give old Jonathan a great big amen on that. There is so much I don’t know, and so much that I only partially know that is a danger to me and others. Even my physicians don’t know everything. I’ll admit that it disappoints me some when they admit it. But it would be infinitely more disappointing if they admitted to knowing stuff that I know they don’t know. I’ve seen doctors like that. They are usually so sure of themselves that they miss something they should have seen. They are the ones who tell the patient, “Oh, you just have a little arthritis I your back.” They are not like the other physicians who told the arthritic-back diagnosed patient, “No, you don’t have arthritis. You have a metastasized stage V lung cancer which has spread to your spine.” This has happened to two close friends of mine in nearly the exact same manner. Even doctors can get it wrong, especially the ones filled with hubris. I’ll take a little humility and temerity with my physicians, please. I’ll also take experience and the wisdom it brings.

We have to remember that our physicians are treating us because it is our own bodies that have failed us, many times in the most remarkably personal way, since lots of cases are not routine, but incredibly complex. As PFF said, “If the practice of medicine were all routine, it would get boring.” I say, if it were always routine, anyone could do it with a little bit of training. It is recognizing the complexities and relishing the challenges that make a good physician. I am thankful for them. I am thankful for them even when my own body will not cooperate with their plans.

So, here is where I am. In the midst of this worsening Psoriasis, I am not a candidate for the systemic treatments which have proven effective, such as biologicals (monoclonal antibodies) which are similar to those used to treat my CLL (Rituximab is a biological I took during my chemotherapy) since a family history of leukemia or lymphoma precludes their use. We might say that I have more than a family history of leukemia; I am personally involved with it. Biologicals work by suppressing your immune system. Since I am already immuno-compromised, taking something that suppresses an already suppressed immune system can be fraught with peril: doubly suppressed, as it were. Topical treatments seem to be increasingly ineffective. I am a complicated case. PFF and a colleague with whom he consulted say that any systemic treatment I may undergo must pass muster with Hemosapien and Gooday because of the effects they may have on my CLL, or the effects they may have on any future treatment of my CLL. Hemosapien is wondering whether my new autoimmune acquisition has something to do with a change in my CLL status. Everyone is wondering, including me, but I wonder a lot. I wonder regularly. I wonder why I wonder about things. Wondering usually comes after speculation and reckoning, but this time, I just went straight to wonder. I wonder why?

Four physicians, at this very minute, are counseling on the best way to proceed without doing ancillary damage. It may not be possible to proceed without ancillary damage, but we can make the best choice based on the assessed risks, since no medical treatment is risk-free. Nothing in life is risk-free. Life, itself, is not risk-free. Welcome to the club.

So, today, my solution for dealing with this consists of the words I have written here. They have been cathartic. They have reduced my stress levels, which may, according to what I have read, reduce the symptoms of my psoriasis. I will not complain about anything. I will take it as it is. I will play it like it is a drama/comedy on the worldwide stage of life. I will not let it be a tragedy, today, for the tragedy is surely yet to come. Right now, there is just some discomfort. In the light of the things other people are facing, some discomfort seems hardly worth mentioning. There is still a whole lot of joy in the midst of discomfort.

I will embrace the joy. I will simply endure the rest.

OK, I admit it….some lingering minor vexation is harassing me, but it will not steal my joy.